Coping When Your Child Suffers Daily

I could talk about children caught in the crossfire of war. Or children trapped in a crime-ridden neighborhood. But I won’t.

Instead, I will talk about children and young adults who suffer the debilitating effects of mental health. The ones who display anti-social behavior – that is difficult to accept, much less understand. The ones who send others away, whether intentional or not.

Every day.

I’m talking about children who are easily forgotten. Out of sight, out of mind – as if they don’t exist.

The most predictable thing in their lives is the isolation. Friends are few, sometimes none at all. The most predictable thing at night is the inability to sleep. Anxiety coupled with fear will do that.

I know the signs too well. For my nearly two decades, I have watched one of my sons suffer. And he has told me intimately of his pain.

In a special needs developmental pre-school, he struggled with the slightest change in routine. By first grade he constantly rocked in his chair and spoke out of turn. Some people empathized. Others judged. A few shamed – making him feel worse than he already did.

Too bad my son didn’t have a more socially accepted medical condition.

The new ADHD drug, that turned his older brother from a daily problem into the student-of-the-month, made his symptoms worse. Flipping chairs in the resource room. Pulling the lead out of pencils with his teeth.

That summer he got kicked out of a therapeutic behavior camp. A radical change in diet – no gluten, no dairy, no chemicals – helped but didn’t fix the problem. To be honest, I dreaded the start of second grade.

Each school day he was constantly redirected from multiple sources from 8am to 3pm – hearing far more often what he was doing wrong than what he was doing right. Way too much negativity for a boy who simply wanted to be like other kids.

“Please make it stop.”

Within the first month of fourth grade, his classmates watched him erupt into a rage – throwing desks and yelling obscenities. That’s when parents called the principal – demanding action. That’s when I took my son to the psychiatric hospital – hoping for change.

A new anti-psychotic medication called Ability proved to be a wonder drug. Although the next four years weren’t perfect, they were relatively calm. In trouble once a week rather than once a day.

Then the hormones of puberty threw his delicate brain chemistry into disarray again. With superhuman strength in an unstable teenage body, he tossed large pieces of furniture into walls with the greatest of ease. He tormented then attacked his brothers – thinking they didn’t like him, when just the opposite was true.

He couldn’t hear them, no matter how hard he tried.

Caught in the revolving hospital door, my son eventually felt abandoned. During one stay a fellow patient introduced cutting to reduce his emotional pain. A new, chronic problem on top of old. Two round of stitches. Dozens of scars.

A daily reminder of being different.

With a variety of psychotropic cocktails over three long years – all ineffective, I kept searching for answers. Finally a new psychiatrist suggested lithium to balance his moods. Within six short weeks, the back-and-forth swings became tolerable.

Unfortunately his attention span remained weak. And he was so far behind in school – labeled a failure, with a diploma out of reach.

Thankfully listening to music and writing lyrics became his comfort. A coping skill he would readily use. As did holding his cat. And participating in Special Olympics.

As a family we endured. We tried our best to understand my son’s daily suffering and accepted his reality – gently pushing him into compliance, never forcing the square peg into the round hole.

By doing so, six years passed without a long-term stay in a psychiatric residential treatment facility.

Then the long-term lithium use caught up with him. His kidneys could no longer tolerate the dose – any dose. Less than a month later, the symptoms-of-years-ago returned. This time paranoia took on a new meaning for my son – now a young adult, as we lived first-hand his “delusions of persecution, unwarranted jealously and exaggerated self-importance.”

Yet he was still a sensitive person at heart. Empathetic to anyone who struggles.

Increasing the doses of two current medications didn’t fill the lithium void. Neither did a new anti-psychotic medication that caused him to gain 35 pounds over five short months. Finally a new “injecting” medication called Aristada did the trick, after waiting weeks for insurance to authorize payment.

Ever mindful of the risks.

Between his impulsive ways and irrational thinking, my family knows that he could easily take his life – before realizing what he’s done. Seeking attention in the worst possible way.

As we have done for years, we will take one day at a time – one hour at a time, if necessary – like thousands of families living with mental illness.

Brain damage from Fetal Alcohol Syndrome, along with an inherited mood disorder and early childhood trauma, isn’t pretty. Although all three are invisible to the untrained eye, they are very real. Just ask my son.

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5 thoughts on “Coping When Your Child Suffers Daily”

Your writing is so helpful: the painful realities of your story and your son’s are always combined with hope. We are behind you in the journey – at the Abilify stage … at 13 years of age. The details are different, but mental illness, born of neglect in an orphanage, or/and possibly of genetics … it is a real, but socially unaccepted illness. We struggle, but it helps to know that we are not alone.

You write so wonderfully and describe this journey so well that so many of us are on. Lithium was our miracle drug as well and I dred the day when my daughter has to find another drug. Both of my children struggle with mental illness and it is so hard to watch their struggle every day.

Craig – I’m wondering if you’ve had your doctors run infectious blood panels to determine if your son has an auto immune disorder? Our son has PANDAS and auto immune encephalitis It took several years to figure out what was going on- and we have traveled to visit and consult with MANY doctors across the US until we were able to figure out what was going on. Fortunately he is pretty stable right now – and he is not on Lithium or other psychotropic drugs – instead he’s been on various antibiotics and anti-virals as well as had IVIG and plasmapheresis to help with his auto immune issues.